My journey with my 24 yr old daughter’s illness began about two years ago. She was living away from home when her symptoms began. She wasn’t able to continue to work or live on her own, she had to move back home with us. My heart was breaking for her.
She had been working at her dream job but now she was back living at home with us unable to work or do much of anything else other than sleep or lie around on the couch. She basically was only able to walk from the couch to the kitchen without having to sit down to rest for a few minutes. She was dizzy, lightheaded and out of breath from the short walk.
As a mom who has a child with a chronic illness there are many times that I feel helpless and useless.
I want to have the answers to all her questions. She wants to know why she’s getting sharp shooting pains in her head, why it feels like an elephant is sitting on her chest, or why are her eyes constantly hurting causing her to be wearing sunglasses even during the evening. I spent many nights lying in bed crying wondering what do I do, how can I fix this? I need to fix this.
I just want my baby girl to live a normal life. I just want her to go out with people her age and have fun.
My life, my schedule now became what needed to be done to try to get her life back on track, find some semblance of normalcy. Ours lives consisted of many different doctor visits to try to figure out how to the handle all the symptoms. Eventually, there were a few times she felt she was able to drive herself to the store or somewhere. I was on edge waiting to get a text from her to hear about how she was feeling. Was she going to tell me her heart was racing, that she couldn’t walk anymore, just needed to sit down because she was too lightheaded to go on? Was everything around her looking “white” and she didn’t “feel real” as she would describe it?
There had to be more than just lying around on the couch. We desperately needed to figure out how to make this better, get to a manageable place where she could at least function.
Her old life was gone, now we had to figure out a new plan.
First find the right doctor. We were very fortunate to find Dr. Abdullah who specializes in Dysautonomia. Luckily for us we only had to experience one uncaring doctor who wasn’t interested in helping us prior to finding the best most knowledgeable one. My daughter received her POTS diagnosis immediately. We then began the process of figuring out which and what medications she would need, which would work best for her. Unfortunately, the many medications needed aren’t a one size fit all. It takes many tries and misses until you get it right. We were constantly changing meds, dosages, and adding additional ones when a new symptom would appear or be a result of the new meds that you now were on.
Hearing a loud crash or noise of any kind would send me up the stairs to make sure my daughter was okay, that she hadn’t fallen. If it got to be too late in the morning and my daughter wasn’t up yet, I would go in to check just to make sure she was okay. When I go out for long periods of time my mind is always on her and how she is doing. We ask our son, who’s home from college right now, to hang around the house if my husband and I want to go somewhere overnight. As a parent you always are concerned about your children, that they are safe, but with this illness it’s so much more and all of the time.
I feel very fortunate. Yes, my daughter did have to come home, leave something she enjoyed but I have had the opportunity to spend so much time with her. We have our special tv marathon shows that we watch together. We have many lunches together and enjoy Tuesday $6.00 movie day. We are even going to take a spectacular week long trip together next week.
It’s been a big adjustment, lots of frustration and disappointment.
I worry about what all the medication is doing to her body and if possibly one day she wont need all of it. I still anticipate a text from her when she goes out on her own but mostly these days it’s to let me know what spoonie related thing she found or something with a zebra print on it. She’s come a long way in a short time, accepting the changes to her life and making the most of it. She keeps busy working on her non-profit raising awareness for POTS. She also has an inspirational Instagram page with many followers who thank her for her positive messages about chronic illnesses.
Just recently she managed to go to a few yoga classes and signed up for a dance class. She’s not always able to attend but some days are like that. One good day doesn’t necessarily mean the next day will also be good. Sometimes having a really great productive day means you’ll be completely depleted the next. There are good days, there are bad days and definitely many frustrating days.
As the mom of a daughter with a chronic illness I am grateful that I can be here for her. I was very proud of my daughter before POTS, I’m even more proud of her now.
Gina Katz
